Miniature golf tournament raises awareness of disease

Monday

Aug 25, 2014 at 8:04 AMAug 25, 2014 at 8:04 AM

By Nancy HastingsTwitter: @nhastingsHDN

HILLSDALE — An outpouring of community support made a little girl with spina bifida feel like she wasn’t alone Saturday.Yellow ribbons and balloons at Pino’s Pizzeria and Fun Park created a festive atmosphere for Abigail Taormina, 7, and others who came to play in a miniature golf tournament to raise awareness about her disease.Her parents, Joe and Christina Taormina, with the help of Tim Wheeler of Freelance Fundraising, made sure families were informed about spina bifida while raising funds for others facing similar challenges. All proceeds from the tournament and sale of yellow ribbons went to the Intermediate School District (ISD).“We hope to do this yearly and we hope it grows,” Christina Taormina said, noting any funds raised would further the cause. “I’m hoping we can raise $1,000 because that would buy a lot of pairs of shoes.”ISD superintendent Mike Potts said the inquiry came “out of the blue.” He and director of special education Richard Rendell and Rendell’s wife, Sally, came to the event to answer any questions participants had about the ISD.“We never know where parents will want to go to share their experiences, but we’re glad to help out,” Potts said. “We will use the funds raised for those who need specialized equipment or shoes. Some parents go from paycheck to paycheck, so our staff runs into this all the time – people really need the help and we pitch in where needed.”Wheeler said expenses can add up and sacrifices are made by parents of children with the disease, so Abigail Taormina wanted to help others facing experiences similar to her own. He became friends with the Taorminas while frequenting their restaurant and also by working on Relay for Life activities, something to which Wheeler devotes much of his time.“Doing fundraisers like this one is near and dear to my heart,” Wheeler said. “I love doing this because it makes a difference.”Shoes for Abigail can cost $150 a pair and insurance only pays for one pair a year, Christina Taormina said.“Since the shoes have to be wider shoes for the brace to fit inside, they are more expensive and she (Abigail) goes through them quickly,” she added.Spreading the advice of other mothers and emphasizing the need for taking vitamins while pregnant is another of Christina Taormina’s missions. Doctors do not emphasize this enough, she said.“No one ever told me to be careful about making sure I had enough folic acid to make sure neural tube defects didn’t happen when I was pregnant,” Christina Taormina said. “I was 33 by the time, and a woman’s body at that age has less vitamins that are needed.”When told their daughter’s disease was at level 5 and that she would be in a wheelchair with no use of her body from the waist down, the Taorminas did all they could to reverse the prognosis. They started exercising their daughter’s limbs early on.“She’s able to walk for the grace of God and is just full of energy,” Christina Taormina said.Getting tired easily is common for Abigail, Christina Taormina explained, though this was not evident during Saturday’s miniature golf tournament. Running from one hole to the next, the girl soon caught up to competitors in front of her and was forced to wait.Even after four surgeries by the age of 7, Abigail Taormina doesn’t let much slow her down. Words of encouragement from her older brother, Nathan, spurred her on Saturday.“Just don’t tell her she can’t do something, because she’ll prove she can,” Nathan Taormina said.Among those participating in the tournament Saturday was Frank Beck, who said he came to support a neighbor. His business, like others in the area, made donations toward the fundraiser.“What Joe is doing here is great,” Beck said. “I think people should come out and enjoy what he has – it’s a wonderful place.”For Sarah Crawford, 12, the event made her feel like she wasn’t alone since she faces spina bifida in a wheelchair. Her mother, Cassandra, said that small communities often do not offer support for parents of those with spina bifida and she was glad to see an event where her daughter could participate and help raise awareness.“She’s having a blast and wheels herself around like a pro,” Cassandra Crawford said.